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Home But Not Alone: The Daunting Task of Being a 24/7 Caregiver

EdWeek Reports: Fierce Debate as DeVos Weighs Schools' Obligations to Students With Disabilities

Alone At SchoolBelow is an important article from Education Week on the state of Special Ed services during quarantine. Has your child gotten anything concrete from school? My Bella received materials and distance learning instructions this week. All incredibly well prepared. The day school shut down, she came home with a thick binder with activites and a clipped version of her IEP with instructions, social stories, and much more.  We do not know if the district will have to continue to pay tuition during this time - it's a private outplacement.  If they cease - I don't know what will happen to her. I'm home trying to work with her, and her two older sisters who are in a day program, and do my work for Age of Autism and all its platforms and running the household. Busy is an understatement. How are you  holding up??  KIM

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Updated.

A provision in the massive coronavirus stimulus bill President Donald Trump signed into law last week has set off a fierce debate between schools, education groups, and advocates for students with disabilities: It gives U.S. Secretary of Education Betsy DeVos 30 days to tell Congress if she needs additional authority to waive parts of the nation's primary special education law.

The Individuals with Disabilities Education Act outlines an array of specific requirements for identifying, supporting, and equitably educating children with disabilities. As schools around the country have shuttered their buildings to slow the spread of the coronavirus, they've reported unforeseen challenges in meeting those mandates while quickly navigating the unprecedented and sometimes rocky transition to online learning.

But advocates for students with disabilities say waiving some of those requirements may let schools off the hook for meeting the needs of students with disabilities. And that might put students at risk of falling far behind their educational goals.

The deliberations put DeVos between two consituencies she's clashed with in the past. Since her divisive confirmation hearings, she's faced heavy criticism from civil rights advocacy groups and disabilities rights organizations that have questioned her commitment to civil rights enforcement.

On the other hand, she's faced distrust from organizations that represent public school administrators and educators as they question her advocacy of private school choice through publicly funded vouchers and tax-credit scholarships.

Now DeVos must consider the concerns of both sides as she weighs what additional waiver authority she should request from Congress.

In response to questions from Education Week, a spokesperson for the Education Department did not detail what waivers DeVos might request, or if she plans to request any at all.

"Congress requested the Department provide recommendations on any waivers it believes necessary to respond to the pandemic" spokesperson Angela Morabito said. "We are reviewing that request and will respond as appropriate. Secretary DeVos has been clear from the beginning that she is committed to ensuring all students, including students with disabilities, can continue their educations during this national emergency."

The debate comes as schools settle into the reality of mass, long-term closures that were originally envisioned to last as little as two weeks.

According to Education Week's tracker, school closures due to coronavirus have affected at least 124,000 U.S. public and private schools and at least 55.1 million students. As of Tuesday night, that included seven states that have opted to close their schools for the remainder of the academic year. Leaders in many others have suggested they may extend closures into the summer as they monitor the crisis. Most states have advocated for continuous learning through online education or take-home packets, but they have varying approaches and expectations.

Supporters of New IDEA Waivers

Among the hardest questions to answer is how to support students with disabilities at home —particularly students who need physical or occupational therapy or more extensive one-on-one supports— when staff members and teachers can't have physical contact with them.

"In 1975, when the law was written, there were not exceptions for a pandemic," said Sasha Pudelski, the advocacy director for AASA, the School Superintendent's Association, which is among the groups that have advocated for some limited waivers from the IDEA. "There is not flexibility granted for certain circumstances."

School districts are also concerned about meeting timelines in the law to review students' Individualized Education Programs, or IEPs, which outline their agreements for meeting individual students' needs. Some schools that initiated assessments to determine if a student required special education services before the closures are now struggling to complete those processes before the deadlines in the law, Pudelski said. That's because paper forms are locked in schools put off limits by local health officials or because therapists can't meet with students to complete specific evaluations that may require the use of manipulatives or physical interaction.

On a much broader scale, some large districts are concerned they don't have the capacity to update the IEPs of all already identified students to reflect the new reality of learning at home without many of the supports they may have had access to at school.

"The clock doesn't stop when schools are providing services as they are now, even though they are physically closed," Pudelski said. "But there are numerous examples of why it's unreasonable to expect them to meet all the different timelines in the law. That's why we recommend a pause until we are back to providing direct, in-person instruction to kids."

The AASA has collected examples of concerns its members are facing as they navigate approaches to special education. Among them:

  • Some special education students don't have access to home internet, and even mobile hotspots aren't effective because they live in "dead zones" where there is limited cell phone reception.
  • There are students with behavioral, developmental, and physical needs that require one-on-one support that schools say they can't deliver remotely. Those include behavioral interventions and specialized instruction for deaf-blind students.
  • There are students with disabilities whose parents don't speak English and cannot assist educators with home instruction and support.
  • Some schools lack capacity because educators and staff members have had to step away from their duties to care for family.

Opponents of New IDEA Waivers

Advocates for students with disabilities acknowledge the new realities schools and families are facing together, but are concerned that waiving parts of the federal law will leave them at risk of losing valuable educational progress, said Meghan Whittaker, the director of policy and advocacy for the National Center for Learning Disabilities.

"Ultimately, we need to keep in mind the responsibility everyone has to keep serving kids," she said. "This is not a good situation, but we need to keep in mind ways to lessen the impact that it has on kids. Waivers are not the way to do that."

When it became clear Congress was considering including some waiver authority in the stimulus plan, the center was part of a coalition of six national civil rights and advocacy groups that signed onto a statement that "no new waiver authority is necessary" from the special education law. (You can read more about DeVos's existing waiver authority here.)

The Education Department can be flexible in how it monitors states' compliance with the law, Whittaker said. She pointed to Results Driven Accountability, an effort by the Obama administration to rethink its approach to IDEA enforcement.

That wouldn't answer the concern from schools about families seeking due process hearings, and it wouldn't address concerns about litigation if schools aren't able to meet the written obligations in students' IEPs.

But Whittaker doesn't anticipate a flood of litigation, especially if schools communicate with families and work to find compromises. Her organization is gathering examples of schools that are doing well in addressing the online learning transition by holding IEP meetings online and working with parents to address their concerns, she said.

About 7 million students nationwide are served under IDEA, federal data show. A plurality of those students, 34 percent, have a "specific learning disability," which may deal with things like reading, math, or comprehension skills.

While there may be unique challenges in adapting approaches for students in other disability categories who may need more intensive supports and therapies, additional waivers may also lower expectations for the services schools will deliver for students with more common needs, Whittaker said.

"We can't make policies that will limit the education opportunity for the vast majority of kids with disabilities right now," she said.

Even without IDEA waivers in place, some advocacy groups have already complained that students with disabilities aren't being served.

When the Massachusetts state education department worked on distance learning guidance recently, special education advocates wrote about their concerns. In one case, a family reported that one child, a general education student, received materials and follow-up while her sibling, a special education student, did not. In a letter, the organizations—the Special Needs Advocacy Network, the Federation for Children with Special Needs, and the ARC of Massachusetts— reported families "facing challenges with a wide range of complex medical, mental health, behavioral and trauma needs."

Federal Guidance

Deliberations on IDEA waivers come after DeVos has already addressed the special education law recently.

As the coronavirus pandemic emerged and it became clear some schools may consider closing, the Education Department released guidance that, under federal special education laws, if schools "continue to provide educational opportunities to the general student population during a school closure" through activities like distance learning and online programs, they they must ensure that students with disabilities also have equal access to the same opportunities.

But that guidance was drafted when there was a much smaller number of closed schools with typical planned closures lasting two weeks. Some states told schools not to offer online education to any students if they couldn't address concerns about special education equity.

As closures extended and states sought to retool their strategies, DeVos sought to clear up confusion in a March 21 fact sheet.

"It was extremely disappointing to hear that some school districts were using information from the Department of Education as an excuse not to educate kids," DeVos said in a statement that day.

The fact sheet reaffirmed that federal law mandates that students with disabilities have an equal opportunity to participate in everything schools provide, including online learning, but assures districts they will have flexibility in reaching that goal.

"Although federal law requires distance instruction to be accessible to students with disabilities, it does not mandate specific methodologies," it said. "The department encourages parents, educators, and administrators to collaborate creatively to continue to meet the needs of students with disabilities."

In some cases, compensatory services may be necessary when schools resume normal operations, that guidance said.

READ MORE HERE.

Follow us on Twitter @PoliticsK12. And follow the Politics K-12 reporters @EvieBlad @Daarel and @AndrewUjifusa.

Comments

Aimee Doyle

It's not just missing teachers - another problem with serving special education students at home is that one doesn't get the specialized services - for example speech and occupational therapy.

And regarding funding, I've been an attorney for decades, and so know the ins and outs of IDEA. IDEA (Individuals with Disabilities Education Act) has always been an unfunded federal mandate. States theoretically have to comply, but few - if any with the increase in autism - have the resources to fully implement IDEA. I've seen schools take things like speech, OT, dedicated aides off the IEP (saying the kids didn't need it) simply because the school couldn't provide it.

The funding problem has to be fixed - it is VERY expensive to provide the education and therapies our kids need. Until special education is properly funded, I'm not sure things will improve much.

Barry Stern

One has to look very hard to find schools with excellent special ed programs, especially for children with autism and related neurological disabilities. Now, with most of the country confined to their homes and some schools innovating with expanded online programs to engage more students, it is not surprising that special ed yet again has become an afterthought with many of these children being denied services since many cannot benefit from online approaches. To make progress and not regress, most need intensive instruction from talented teachers who are present in real time.

One way to constructively approach how best to serve children with neurological disorders in trying times like these is to give parents the option of determining where and by whom their child with special needs will be educated. Parents would be helped an outside of school agency that would be designated by the state to evaluate the severity of special need students and to use a fair yet affordable method to determine the amount of funding that each student would earn.

You see, a major problem of special ed throughout the U.S. is that public schools have an inherent conflict of interest. They provide all three functions of special ed: (1) diagnosis, (2) prescription (IEP), and (3) filling the prescription (therapy/education). To obtain better performance, transparency and accountability, legislation is needed to split up these three functions. Schools currently do them all.

Why not experiment with a different approach that a few districts in the state might be willing to try? Suppose schools were to only fill prescriptions for certain types of disability that are not being well-served? A state agency or contractor winning a competitive bid would become responsible for diagnosing, prescribing and then doling out to interested providers sufficient funds to adequately fulfill the child’s prescription (IEP). The amount of funds allocated for each SPED child would be determined by the agency/contractor in accord with its annual diagnosis of the child. Supporting these fund allocation decisions would be a thorough cost-accounting system, i.e. weighted student average, that keeps track each year of provider costs for specific disabilities and levels of severity.

The case for getting the schools out of the diagnosing, prescribing and fund allocation functions is made more fully by the following commentary: http://www.educationviews.org/increase-federal-special-education-funding-parental-choice/

Bob Moffit

@ Pogo

What Dell did mention was establishment of new code specifically for covid .. and DOCTORS HAVE BEEN ORDERED to assign this new code to ALL DEATHS with any remote connection to covid .. most specifically deaths the doctors know were due to pre-existing co-morbidities .. like cancer, heart, stroke, etc. Doctors assured they will never be challenged for assigning new code.

So we average THOUSANDS of deaths in country every day … only NOW a majority of those deaths will be classified as caused by covid.

Pogo

Surprised that Dell last night on Highwire didn't mention Sweden's approach to this pandemic.

They have opted for the least expensive — and so far effective — methods.

Provided protective equipment for all clinical staff, performing contact tracing, and protecting the most vulnerable ( as advised by WHO).

Ban gatherings of 50 (fifty) or more people.
Asked (not ordered) people to put off unnecessary travel both home and abroad.
Advised all but healthcare workers not to visit people of 70 and over.
Work from home if possible.
Most schools are ‘still’ open.

Assure the Swedish public that whilst Cov-2 is a 'novel' virus which will inevitable lead to a few more people become seriously ill than in normal flu season, if everybody does their part, then fatalities can be kept to the minimum but for most people it will be no worse than regular influenza.
People appear to be complying and Swedish webcams show fewer people out and about.
https://trafiken.nu/stockholm/kameror/stockholms-innerstad/sveavagen-norrut/
The only commodity they hoarding is right now is rumoured to be snow but as the webcams for Swedish sky resorts all appear to have been taken off-line, I can’t confirm this ;-)

These are the two Swedish official health information sites.
https://www.folkhalsomyndigheten.se/the-public-health-agency-of-sweden/communicable-disease-control/covid-19/

https://www.krisinformation.se/en/hazards-and-risks/disasters-and-incidents/2020/official-information-on-the-new-coronavirus

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